MND Musings - This is a record of a chronic illness, Primary Lateral Sclerosis, a Motor Neurone disorder, like a slow MND / ALS. My body may not be very cooperative; in fact it's become as stubborn as a donkey, but I'm not dead yet.

Monday, 30 January 2012

Well, Mr Hester, you clearly didn't read my post before announcing you had decided not to accept your bonus after all. I'm sure Mr Cameron has phoned you to say thank you. Of course, it hasn't got the hacks off your back - who conveniently forget that you've turned an annual £24.1 billion loss round in four years so that the bank is now making a profit. I don't reckon it's your fault that the world economy has continued to slide into recession - which, I assume, is why the markets remain a tad depressed. Things like the euro crisis and recession in the States can't be laid entirely at your door.

So I wouldn't blame you, if you picked up your substantial bonus from last year (more than four times this one!) and offered your considerable financial talents elsewhere. I'm sure there are some banks out there who'd love to use you. I get the feeling that you're not quite ready to enjoy your arboretum and twiddle your thumbs. It would be a shame if you did either.

Or here's another suggestion. How about taking an unpaid sabbatical and producing a rationale for incentives that even the grubby Quintus Slides of this world could understand? They, after all, are the public's source of wisdom on such matters. I think you could afford it. Should RBS look like going pear-shaped while you were working on it, you could always step back in and steady the ship. Hopefully the team is good enough to carry on with the progress you've made so far. While you were about it, how about George Osborne, or even David himself, commissioning you to devise a bonus-scheme for the city big bosses which is transparent and fair? I reckon, coming from you, they might listen, and something good come from this tangled mess of envy and inequality.

Sunday, 29 January 2012

Give the - I was going to say, the poor man, but that wouldn't exactly be accurate - the rich man a break. A few years ago, my late aunt bequeathed to me some Royal Bank of Scotland shares, which was very kind, not least because they were worth quite a bit. Sadly, I didn't cash them in, and now, as everyone knows, they're practically worthless, thanks to the good offices of the benighted and knighted Fred Goodwin. They're worth about a twentieth of what they used to be, which is a massive fall by any count. Now I'm not too fussed about my personal wealth, to be honest. We have enough to get by and to enjoy life. For example, we've have just booked to seeDreamboats and Petticoatswhen it comes to Oxford in the summer, including the wise-in-hindsight line: 'It's no good living beyond your means. If everyone did that, the whole country would go bankrupt.'

Of course, that's what Northern Rock and RBS did massively, and at the time it seemed impossible not to bail them out - hence the government owning a whopping 84% majority shareholding of newly created RBS shares. I'm not complaining, as my shares were a gift in the first place, but I have been interested in their fate ever since. RBS was clearly built on foundations of endebted sand (like of course many Western economies, including our own). Sir Fred Goodwin was hoofed out and in 2008 Stephen Hester was shoe-horned in to rescue the company.

I am not happy with the huge disparity of wealth existing in our country in a time of economic austerity. I don't like the £millions salaries and bonuses that executives award to themselves and each other. In my view there is no justification for them. No one needs such vast sums year after year, and frankly I don't buy the talent-drain argument. But I actually can see some logic in offering Mr Hester a £2000 cash plus almost a million in shares package, if, as he seems to be doing, he steers the loss-making RBS tanker off the rocks and turns it around. What more effective incentive could there be for a banker than to see the value of his shares rise as the company enters profitability? In the meantime, we, the taxpayers, would have the prospect of eventually recovering the £85 billion we sank into the out-of-control vessel four years ago - or even making a profit.... That could, given the political will, be useful in reviving the economy and creating jobs for our young people.

Of course, £85,000,000,000 is not a bottomless pot in national terms, but it's not peanuts. Unless Mr Hester and co succeed in turning round the company, it'll be more like a bottomless pit. I sometimes wish populist politicians, like Mr Miliband, would ignore the tabloid pack and pause to think what the cost of failure at RBS before taking pot-shots at the messenger his government appointed.

Meanwhile, in order to be even-handed, I scarcely believed when Jane told me that the cost of the opening and closing parties of the Olympics and Paralympics had jumped from £40 million to £80 million, and the budget for security had also doubled to £553 million. Maybe the security is necessary. Maybe we have intelligence of a major Al-Quaida threat. The minister, Hugh Robertson, blamed the Arab Spring, which his leader supported to the tune of £950 million in Libya. It seems to have increased insecurity here.

But the opening? Apparently we're going to have the biggest bell in Europe cast - er? Why? "Ask not for whom the bell tolls," perhaps. So we can ring the death knell for the British economy? We're going to call the ceremony, 'The Isles of Wonders', to celebrate both Shakespeare (The bell is to be inscribed with Caliban's description of the island in The Tempest, "Be not afeard, the isle is full of noises".) and the National Health Service... The Tempest's island is of course not part of Great Britain. I was mildly amused to see an academic article beginning, "The evidence is overwhelming that Shakespeare not only set The Tempest on a Caribbean island,..." - Jamaica, possibly, home of Usain Bolt and tipped by Asafa Powell to make a clean sweep of the men's 100 metres? Even were the bard thinking of England, the end of the play is not exactly encouraging, as it leaves Caliban and his two drunken companions in charge of the island, and we're left to speculate what sort of government they'll end up being - while the rest return to the civilization of Italy!

In the "Austerity Olympics" of 1948, Janie Hampton, Olympic historian, told the Today Programme that "no money was spent at all". There were young people, choirs, orchestra and military band. And it was a jolly good show. The Edinburgh Tattoo is pretty impressive too. I'm not sure why we need to have all the latest gizmos, light shows, professionals and excessive fireworks - and try to outdo other openings. The Government constantly tells us we have to economise and that we're in a time of austerity. Too right! And yet all of a sudden, there go our taxes (or our national overdraft) on what are only games. A better way to celebrate the NHS would be to divert £40 million in its direction, rather than use the money as a prodigal means of telling the country how much the coalition loves the health service despite the cuts it's making.

Tuesday, 17 January 2012

One of my favourite lines of poetry comes near the end of T S Eliot's The Journey of the Magi:
"It was (you may say) satisfactory." It is the precisely accurate word for the magi's discovery of the baby after their cold coming at the worst time of the year. Eliot rescues the word from its debased coinage of "passable" or "mediocre", and returns it to its pristine meaning of "making enough" or "giving satisfaction". After a good meal, when offered more, you reply, "No thank you, I am satisfied." Eliot resisted the contemporary habit of throwing in superlatives or adverbs to lend weight to a word, knowing that it merely serves to drain the original of meaning. You know the sort of thing, "That's really really good (or wicked)!" or "That's mega-cool!"

So in a way I was pleased to hear the news yesterday that Ofsted intends to scrap the "Satisfactory" category in its assessment of schools' performance. Previously there'd been four: "Outstanding - good - satisfactory - inadequate". Yesterday an Ofsted press release announced: "Ahead of a government summit on ‘coasting schools’ to be held at Downing Street later today, Ofsted’s Chief Inspector, Sir Michael Wilshaw, has confirmed his intention to scrap the ‘satisfactory’ judgment for school inspections. The move is designed to tackle the number of coasting schools that have remained stubbornly ‘satisfactory’ over a number of inspections, as highlighted in Ofsted’s Annual Reports over recent years. The proposals, which will be subject to consultation, would mean that any school that does not provide a good standard of education will be given a new “requires improvement’ grade." (Pity that even Ofsted managed to make a punctuation error - which is less than satisfactory and requires improvement.)

Sadly too Ofsted isn't acting from as disinterested a motive as restoring the power of language. So Chief HMI and former whizz-kid headteacher (credited with turning round failing schools single-handed...), Sir Michael Wilshaw, says, "Of particular concern are the 3,000 schools educating a million children that have been 'satisfactory' two inspections in a row. This is not good enough." (As I've explained, "satisfactory" precisely means "good enough".) It sounds as though the idea is to amalgamate the present "satisfactory" with "inadequate", creating an even blunter hammer to crack the nut (or the NUT perhaps). In fact, dark suspicions lurk that it's a ruse to prove how unsatisfactory state schools are after all, proving the need for academies, free schools and all the other devices for diversifying (or confusing) the system. The government might like to know, what every effective teacher knows, that workers, whether students or employees, respond better to encouragement than to threats.

It is devoutly to be hoped that the promised "consultation" will be more of the John Lewis "forum" model (favoured by the deputy prime minister) than the commission-and-ignore approach which the government seems to be meting out to the Dilnot Report.

Saturday, 14 January 2012

Last Sunday, the most famous MND survivor and scientist, Professor Stephen Hawking was 70. He got MND 50 years ago. I was sent this report by a friend and fellow blogger, who commented on how inspiring his words were. "The severely disabled but always active and indomitable professor Stephen Hawking said on his 70th birthday: 'Remember to look up at the stars and not down at your feet. Try to make sense of what you see and wonder about what makes the universe exist. ... Be curious. And however difficult life may seem, there is always something you can do and succeed at. It matters that you don't just give up."

"Professor Hawking reflected on his life as 'a glorious time to be alive'."

I love his sense of wonder. In one way or another, we can all share that, and the great thing is it doesn't depend on our physical (or intellectual, come to that) abilities. A child has loads of it. Somehow we lose the wonder muscle as we grow up. I suppose it's a case of atrophy from lack of exercise, but the muscle is still there and we can bring it back into use, given practice - and then what a wonderful world to be explored awaits us!

As someone who was written off as terminal with only two years to live 50 years ago, he is eloquent evidence as to why we should not rush to write people off as fit only for a lethal injection. "It matters that you don't just give up." And I'd add that Stephen Hawking matters, whether or not he succeeds at anything more; but he matters because there are those who care about him as a person they love - and that makes him infinitely valuable.

I don't think he's any less flawed than the rest of us. I don't think his great intellect grants him unique insight into the meaning of life, or the existence of a Creator. Cleverness has its limits. Science deduces from the physical, but some things like love and beauty aren't susceptible to that sort of investigation. We just recognise them. As we begin to deteriorate, mentally from the age of 45 we learned this week, our physical nature begins to decay. To be honest facelifts and botox only make matters worse. And yet we don't become any the less capable of loving and being loved. MND does rapidly - or gradually - ravage the body, but still one cares, is cared for and has a life to live. And, as I sit at my laptop in touch with friends on the other side of the world, I entirely concur with the professor: it is a glorious time to be alive.

Monday, 9 January 2012

Personally, I was disappointed: Bristol City 0, Crawley Town 1, in the FA Cup. There's a posse of us at church who follow sports, and so my old interest in Bristol City was rekindled. Well, it had to be different from the local favourites, Swindon, Oxford and Reading. This season has been quite interesting, as they sank to the bottom of the table - until Derek McInnes was appointed as their new manager, and their fortunes began to change. Now they're up to 6 off the bottom in a steady but not meteoric rise. So being beaten by the well-endowed and precocious Crawley from two divisions lower is a bit disappointing - compounded, of course, by Swindon's flukey win over Wigan. But there - as my wife annoyingly but accurately says: "It's only a game." Wasn't it Liverpool's Bill Shankly who said that football was more than a matter of life and death? Pretty silly, but it's certainly big business.

As clearly are the Olympic Games. I have a feeling I for one will be over-saturated with the pre-Games hype. We had it on Songs of Praise yesterday; David Cameron bigged it his New Year message - as one of the two hopes for relieving a year of economic gloom; today he dragged the cabinet down to an Olympic venue for a meeting. I admit they are the big ones, but still they only games. Sorry!

Thursday, 5 January 2012

Tucked away in the BBC's website report of today's campaigning report of assisted dying was a sentence which caught my eye. "However, one of the 11 commissioners, Reverend Canon Dr James Woodward, disagreed with the conclusion." I'd corresponded with him last year after my somewhat intemperate refusal to give evidence to the "commission", and apologised for tarring all the commission with the brush of prejudice at the outset. I've made no secret of my feelings about the whole exercise, but I have to say that Dr Woodward's statement in Appendix 3 of the lengthy report repays reading and for me is its redeeming conclusion. It can't have been easy to differ from the majority vote.

He seems to me to have identified important issues, in particular breaking our society's taboo of discussion of death and dying, and having a broader debate about the kind of society we want to live in before thinking of changing any so fundamental law.

"As set out in the executive summary to this report, I do not feel able to put my name and support to the more specific recommendations that are made in chapters 11 and 12 of this report concerning the majority decision of the Commission that the present law could be changed to allow assisted dying in restricted circumstances. I support the coherence, rigour and quality of this work and hope that it will be read and used as a basis for further research, work and public debate. I regret that some have felt unable to contribute to the process of discussion, engagement and listening that has characterised the process. I wish to continue to work with my fellow Commission members to promote a deeper and wiser dialogue that moves away from polarised and entrenched positions on assisted dying that are incapable of listening to a wide range of issues and experience.

"In our work it has become clear that there are significant difficulties with the present law. My visit to Switzerland to learn something of the law and practice there raised many more questions about the way a culture views and values life, death and the freedom to choose. However this complex and contested area of human life cannot be dealt with through the law or medicine alone. We need to engage further with the social and ethical reflections on experiences of death and dying. The ethical debate is not over and it is the responsibility of all ‘sides’ of the debate to listen more carefully to the questions and concerns of one another.

"Further there are important theological questions about suffering, personhood and the value of the vulnerable that need to inform a more open conversation about death and dying in Britain today. I am particularly concerned about the adequacy of UK health and social care where dignity and compassion are values that are universally affirmed but often not part of the day to day practice of those who are tasked to care.

"In conclusion I believe that a broader societal debate is required before any attempt is made to move to a change in the law on assisted dying. As a society we need to bring all our collective wisdom to bear on these questions in an open and honest fashion. I understand that my particular view is a minority one and I both respect and admire my fellow Commissioners in their views and recommendations. I hope that the report will be read carefully — it is an important contribution to the debate."

I have written to thank him, and I very much hope his thoughtful voice will be listened to. Meanwhile, in response to my last post, Sally, a doctor friend of ours, could have begun part of the discussion with this powerful message: "Years ago, while working in a hospice, I admitted a patient who was in agony having had totally inadequate analgesia in a prior hospital. His wife was screaming at me to end his life, and he was rolling around in agony, but within in a short time he was sound asleep with good analgesia. He slept for about three days having been completely exhausted by being left in severe pain. He eventually woke up and subsequently had a good death.

There is such a thing as a good death, but death is remote and almost taboo in contemporary society. We should not abdicate responsibility for striving for excellence in palliative and terminal care. We should not turn doctors into executioners. This is not a religious discussion. Civilised secular society has a role in addressing the concept of a good death which has no need whatsoever to involve killing."

So the Falconer "commission" has rebranded itself as a "panel of legal and medical experts" and confessed to being funded by and packed with assisted suicide supporters. In fact, the MP involved said, there was no one on the panel previously opposed to it.

The fundamental issue seems to me to be a matter of choice, but it's not a matter of individuals choosing how they want to die. Rather it's a matter of us deciding what sort of society we want to live in.

This is the article I'd hoped would be published in a national paper, but wasn't in the event.

"Last year, in the midst of austerity and
recession,the BBC’s ‘Children in Need’ raised a record £26,332,334 by
the end of a single evening. Today the
self-styled Commission on Assisted Dying under the chairmanship of Lord
Falconer, champion of the legalization of assisted suicide in England and
Wales, will be presenting their conclusions. Considering the ‘commission’ is funded by and predominantly
made up of similarly-minded people, it’s not been hard to predict what some of
those conclusions might have been.
They’ll be couched in reasonable and balanced terms no doubt, and
they’ll hardly be novel. However,
on the principle that if you keep repeating something enough times, it will
eventually be believed, they’ll serve their purpose.

"One of the main themes, let me guess, will
be that of freedom of choice. The
argument runs something like this: since 1961 suicide has ceased to be a
crime. Terminally ill people, for
example with Motor Neurone Disease or Locked-in Syndrome, reach a point when
they are unable to take their own lives.
Thus they are deprived of a civil right and unfairly discriminated
against. They, it is said, of all
people might well want to end their lives - and the law as it stands means they
can’t, because the same Suicide Act (amended 2009) goes on to state: “A person
(“D”) commits an offence if (a) D does an act capable of encouraging or
assisting the suicide or attempted suicide of another person, and (b) D’s act
was intended to encourage or assist suicide or an attempt at suicide”. It does also leave the jury discretion
to convict or not, and only permits proceedings “by or with the consent of the
Director of Public Prosecutions” - which explains the minimal convictions under
the Act in 50 years.

"If someone like myself should wish to leave
our disease behind, why should we not say so and why should we not be assisted,
without the fear of our assistants’ facing prosecution? Surely it’s my life and my choice?

"In discussions people have said to me,
“Suicide’s been legalized. That
means it’s my right to take my life.”
The wording of the Act does not exactly express that meaning: “The rule
of law whereby it is a criminal act for a person to commit suicide is hereby
abrogated.” To say that the state
will not regard a suicidal person, whether successful or unsuccessful, as a
criminal, is not the same as saying that the state sanctions or encourages
suicide. In fact the wording of
the 2009 amendment was widened in order to cover internet sites promoting
suicide, implying that the state’s inclination is to discourage suicide. Mr Justice Baker’s judgement in the
recent case of patient ‘M’ summed the principle up: “The factor which does
carry substantial weight, in my judgement,
is the preservation of life. Although not an absolute rule, the law regards the
preservation of life as a fundamental principle.”

"The question is whether personal choice can
trump the preservation of life. It
is, of course, not true that we have unfettered freedom of choice. For example, we are not free to drive
on the right or without a seat belt, because the state does not want us to kill
either ourselves or each other.
Similarly, where we may smoke is restricted. Even what we may say and write is limited. There are
good reasons for such things, but the point is choice is not an
inherent right. Autonomy, the
oft-touted synonym for choice, literally means “having one’s own laws”. That is incompatible with being part of
a larger society. Therein lies the
flaw in arguing for legislation which allows for a variety of practice in the
taking of life, or assisting to die.
Once you say that it’s possible to decide your own personal laws in
matters of life and death you have no fundamental ground to say a particular
action is unacceptable. It will
all depend on circumstance and motive – and that is shifting sand. Even ‘compassion’ is an elusive and
subjective motive. You may set
apparently water-tight perameters, but they also will shift.

"To abandon the preservation of life as a
fundamental principle of our society’s laws, in the name of personal choice,
would be to retreat from centuries of hard-won progress. It was, after all, only in 1969 that
Parliament voted to abolish the state taking life. During the debate on the abolition of hanging, Duncan Sandys
led the opposition to the vote, arguing that “We have no right to assume that the
firmly held views of the overwhelming majority of the British people are
unworthy and misguided.” His view
was shared neither by the Commons nor the Lords, and so even the life of the
murderer was protected. (It will
be interesting to see whether Sandys’ contention about public opinion, which
seems predominantly to favour euthanasia, will be echoed by the ‘commission’.)

"So what will society say to me when I get near the end of my
MND – if it’s not to allow someone to top me when I’ve had enough? I hope it will say, “We will see you
through this. We will give you the
best quality of life that’s possible.
We will provide all the palliative care that you need, including
supporting your carers. We will do
everything possible to ease your symptoms and to control your pain.” And I would say, “Please keep me
comfortable. If the pain relief
should shorten my life by hours or days, that’s all right. You’re only doing your job. And when I should die, just let me
be.”

"Is it a Utopian ideal? In fact it’s the legal situation
now. But aren’t there doctors out
there who’ll betray one’s trust?
Aren’t there trusts and commissioning consortia who will try to trim
their care costs? There are horror
stories of the neglect of the elderly in hospitals, after all. (It’s worth pondering whether one
factor beneath the horror stories is the progressive devaluing of the dependent
person?) Well, there are risks, but
the society which firmly holds the preservation of life as a fundamental
principle will be on the lookout for such breaches and, most importantly, put
its resources where its principle is.
And the risks are small beside the risk of abandoning the principle that
life is precious above all else.

"‘Children in Need’ projected on our TV screens the
courage and beauty of disabled, dependent and often dying children. It showed us the incredible endurance
and compassion of those who care for them. There can be no question as to their worth and of the value
of enhancing or at least ameliorating their lives. We know it's right. The society which cherishes life, even at its most tenuous, is far preferable to one which admits the principle that some lives are disposable. 'Children in Need' or the 'Commission'?I know which vision I prefer."

from Children in Need website

I know the so-called experts are not calling for euthanasia, but only for assisted suicide of mentally competent adults, but my point is that once the preservation of life is breached as a foundational principle of law and life-taking is permitted a Rubicon will have been crossed, and we shouldn't be fooled that it's the end of the road for the advocates of euthanasia.

Wednesday, 4 January 2012

Before the media frenzy breaks tomorrow with the launch of the "eagerly awaited" - listen out for that phrase - it could be part of their press hype - report of the phoney Falconer "commission" (it's already been launched - or "advertorialised" as Peter Saunders pungently put it - in The Telegraph and The Observer), time for me to reflect in the lull.

With Jane's broken collar-bone I've entered the realm of employing a carer. Ralph comes in to give me my stretches, get me up, dressed and down to breakfast, leaving after I've been to the toilet. My usual chair's been replaced (again) with the riser-recliner so that Jane doesn't have to haul me on to my rollator. So most of the day is spent here, where I'm sitting, with necessary toilet breaks, of course, (sorry to mention it again), until Rachel gets me ready for and in to bed. It's the first time someone who's not family has had to deal with me like this, and I wondered whether I'd find it embarrassing or undignified as some people seem to. Or would I feel I was being "man-handled" like Tony Nicklinson? I have to report I felt none of those.

It seems to me it's largely a matter of attitude rather than reality. I'm not minimising the experience of dependency and diminishing powers. However we are simply mistaken to call it undignified. Actually, as Archbishop Cranmer says, there's Dignity in Living (as opposed to the mantra Dignity in dying).

On a lighter note, yesterday my three brothers and their wives came to lunch. We try to meet up once a year after Christmas - saves on postage for the presents! Because Jane couldn't drive, we changed our original West Country venue to here, with the others doing all the catering. It worked well - and we're still left with remnants of the meal.
My brothers and I still enjoy giving each other presents: I gave them a jolly little monkey that waddles along playing a pair of cymbals. (I can't work out whether he's like me or Lord Falconer. Like me he's wobbly on his feet; like the peer he looks good but does a lot of banging to little effect.)

One of them gave me a proxy goat, another a clock which has a different bird singing every hour (now banished to the conservatory), and the third "The Perfect Man", which has the following verses attached:

"They say good men are hard to find.
I know this to be true
But I hunted far and wide
And found one just for you!

He is no good at DIY,
He cannot fix the car;
But his socks are never smelly
And he doesn't stray too far.

He always listens patiently,
He won't pester you in bed
And if you get fed up with him -
You just bite off his head!"

It was, in case you'd not guessed, a packet of five of these cheery fellows. . . .